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    #31
    Originally posted by Dann21
    maybe I'm a little selfish when I say this, but speaking as a complete quadriplegic I would much rather have cancer than be a quadriplegic. If you have cancer you at least have a chance of getting better. To me, being a quadriplegic is hell. It took away my high school years college years, favorite hobby, privacy, independence, self-confidence, and relationship life. Not only is it bad enough that it affects you, but it affects your whole family as well. Everyone's lives have changed. It has robbed me of everything, and left me with little.

    To me quadriplegia is just a prolonged death sentence with little enjoyment. The worst part isn't for me though... it's living with the fact that my parents have had to change their lives 180° in order to care for me. I feel much worse for them than I do for myself. They take great care of me, but I wish I could give them their lives back. I wish this injury never happened. It robs me of the most important thing to me... marriage and having a family and has left me with the guilt of transforming my family's life.

    I'd much rather try beating the odds of having cancer or die than live with the guilt I have of being dependent upon others, transforming their lives, and living my life out like this.
    You think cancer doesn't do all that and more? SCI is horrible but having seen what cancer did to my sister in law, I wouldn't swap.
    C5/6 incomplete

    "I assume you all have guns and crack....."

    Comment


      #32
      You 'think' being the operative word here. No offence but not even the brightest minds in science can make anywhere near as 'precise' a prediction as that you've just given. I just wouldnt want a newly injured person or indeed a relative reading that and thinking it was based on fact or some kind of inside knowledge.

      The truth is no-one knows and until the day that we do we need to keep pushing on and, if we're so inclined, try to raise awareness and a few pennies for the cause along the way I can safely say with 100 percent confidence that every day is a day closer, however [/QUOTE

      Cherry,

      The "inside knowledge" is not related to the science. The reason I believe the timelines I suggested are reasonable is because of the length of time it takes to take drugs and procedure oriented therapies through clinical trials. I believe if we had the financial resources that the timeline could be greatly accelerated. As I remember NIH funding for SCI in 2007 is 60-65 million. A small drop in a very empty bucket. I believe Dr. Young once said we needed 500 million a year for 5 years (I am paraphrasing and the numbers may be off).

      I am sorry to have offended you. I do think it is important for people to understand that we may be in our wheelchairs a while longer. In the grand scheme of things 10-20 years is a relatively short time. I hope it happens much sooner. I really did not mean to imply that something would be available at 10/15/20 years, I did not mean to make a "precise prediction".

      I think we can be very encouraged by the advances in robotics. There is a tremendous amount of research funding for mechanical devices that will make a huge difference for people with paralysis.

      Obviously, no one knows for sure. I have my opinion and many may disagree. Time will tell.

      WCR
      Hi, no I wasnt offended I was merely saying that subjective views on said topic can be misleading and dangerous to newer members and I think it is important to take most things said in this particular forum by members with a pinch of salt.

      I hear you on the lengthy process of clinical trial. However I believe the boost that many need will actually present itself WAY before the commencement of 2nd and 3rd phase. By that I mean once we have proof of principle and concept of chronic recovery, even in a laboratory rodent, the wait will seem worthwhile and easier. And even if there becomes a situation whereby others have to sit, wait and watch their 'peers' receive treatment, be it in a clinical phase or otherwise, the knowledge that the treatment will 'trickle' down eventually will be a physcological turn around for many, I believe.

      I will always attempt to counter most predictions because, like many have stated in this thread, they are personal opinions and therefore have a tendency for inaccuracy, be that painting a better or worse picture than reality. And like you said, that reality eludes us for now and time will tell. It's all rather exciting.

      Comment


        #33
        John and Joan Q Public think the only way to help spinal cord injuries is through stem cells. You can thank the media for that.

        I've had doctors (GP, anesthetists, urologists) even tell me that!
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

        Comment


          #34
          Originally posted by Wise Young
          In the last three years, my brother, my best friend, and Dana Reeve die of colon, gallbladder, and lung cancer respectively. It broke my heart watching them die, with no hope.

          Sorry to post this in this section Wise, I noticed that you mentioned knowing someone that passed away from gallbladder cancer. My father passed away fro this also last year. I was just wondering if there is any research in regards to this type of cancer being done that you may know of?

          Comment


            #35
            Originally posted by IanTPoulter
            There are cures for certain types of cancers, why should there also not be cures for certain types of sci?
            Several studies suggest that 90% of people with incomplete spinal cord injuries are able to recover walking. Only 45% of such people walked in the 1980's.

            Wise.

            Comment


              #36
              Originally posted by zokarkan
              Sorry to post this in this section Wise, I noticed that you mentioned knowing someone that passed away from gallbladder cancer. My father passed away fro this also last year. I was just wondering if there is any research in regards to this type of cancer being done that you may know of?
              There have been some advances in treatment of pancreatic cancer with glivec but is effective for only a minority of the people but my friend got that without any benefit. He was asymptomatic before the discovery of the tumor and died in less than 3 months.

              Wise.

              Comment


                #37
                Originally posted by Wise Young
                Several studies suggest that 90% of people with incomplete spinal cord injuries are able to recover walking. Only 45% of such people walked in the 1980's.

                Wise.
                I wouldnt be surprised to learn that many of these people that regain ambulation are doing so because they havent been told its impossible, and Methylpred offers a better outcome for acute injuries but my understanding is that it is not a cure or a function restoring treatment.

                Comment


                  #38
                  Originally posted by Wise Young
                  Several studies suggest that 90% of people with incomplete spinal cord injuries are able to recover walking. Only 45% of such people walked in the 1980's.

                  Wise.
                  Hello Wise, that's great!..
                  Personally, I don't care about walking. If you sit down in a chair, you will not be a disabled Wise :-) , and walking while being disabled is possible. (Stand Up and Walk project, Treadmill)
                  I consider I will be cured if I recover my sensitivity and my ejacs. Living without sensitivity and ejacs is virtually killing your brain and drive you mad...
                  G78

                  Comment


                    #39
                    Originally posted by Wise Young
                    Dann21,

                    In the last three years, my brother, my best friend, and Dana Reeve died of colon, gallbladder, and lung cancer respectively. It broke my heart watching them die, with no hope.

                    Do not feel guilty about your dependence. I of course cannot speak for your family but I suspect that they love you very much. A cure for spinal cord injury is not only for you but for them.

                    Wise.
                    Wise, I'm sorry to hear about your losses. I truly am.

                    You said that you suspect that my family loves me very much. They do very much indeed, and they take excellent care of me. I don't know what I would do without them.

                    I know you said watching them die with no was devastating. I'm sure it was.

                    I remember after my injury in September of 99 I went to a big convention at Rutgers a couple months later where Travis Roy was the speaker. I'm sure you remember it. It was also when New Jersey passed a law, saying that part of peoples parking tickets would be going to spinal cord research, and I remember you pulling out a bunch of parking tickets out of your pocket and making a joke saying that you are now contributing to spinal cord research. I remember it like he was yesterday. I also remember a lot of buzz going on at the time in 99 that there would be some promising cure within those five years. Well, 2004, 2005, 2006, and now 2007 is passing and it seems like although there is a lot more going on the reality is for those of us with complete injuries we are going to just have to live with it. There really is "no hope," just wishful thinking. I applaud you on your research and sharing your information with those of us here on these forums. I don't know how you do it. Answering people's questions on forums, traveling, continuing the quest for a cure, but somehow you do. You're an inspiration!

                    I do believe that there will be a cure one day. We will not be 100%, but we will regain some sort of mobility, and anything is better than nothing. But with politics and lack of funding I think that that cure will only come for the next generation.

                    Now I will try and clarify what I was trying to say in my earlier post.

                    Let me try to better clarify what I was trying to get across in my post. I'm a quadriplegic, therefore dependent upon others for everything. If I were a paraplegic things would be completely different for me. If I were a paraplegic I would never want to have cancer, but being a quadriplegic for almost 8 years now I can't tell you that the dependency upon others makes you feel like a baby and I'm 24 now. I'm in pain constantly; however, the people I feel the worst for is not myself it's for my family.

                    I would rather have cancer and take whatever little chance I have of surviving than live the life I have lived as a quadriplegic.

                    I guess in other words you could say that I'd rather be dead than be a quadriplegic at the level I am.

                    I know others will say you should never say that you want to be dead. You need to seek counseling. All counseling and medication will do is alter the way you truly feel. I know how I feel after these eight years, and more importantly the guilt I feel of robbing my family of those eight years is worse to me than the injury.

                    I feel that although my death would be a tragedy to my family, and it would take them time to recover, at least then they would be able to eventually pick up the pieces and slowly move on and not be left with the burden that I feel I have caused them.

                    Just wanted to clarify my statement.
                    Last edited by Dann21; 21 Jul 2007, 2:13 PM.

                    Comment


                      #40
                      Originally posted by IanTPoulter
                      I wouldnt be surprised to learn that many of these people that regain ambulation are doing so because they havent been told its impossible, and Methylpred offers a better outcome for acute injuries but my understanding is that it is not a cure or a function restoring treatment.
                      Nonetheless, it is progress. Why denigrate it? A lot more people are walking after spinal cord injury. Incomplete spinal cord injuries now are over 60% of the newly injured. So, a majority of the people with spinal cord injury are recovering walking. This happened in the past decade.

                      While I too believe that a nocebo effect may have contributed, it is also true that intensive locomotor training, exercise, and functional electrical stimulation have contributed as well. I don't know about methylprednisolone but basically, it restored 20% more function.

                      Wise.

                      Comment


                        #41
                        I know this has been discussed before but what about spontaneous regeneration?

                        I only ask because I've had some 'oddities' within the last year. I had some 'oddities' years ago ... but this is the second time I've noticed changes.
                        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

                        Comment


                          #42
                          Originally posted by Dann21
                          Wise, I'm sorry to hear about your losses. I truly am.

                          You said that you suspect that my family loves me very much. They do very much indeed, and they take excellent care of me. I don't know what I would do without them.

                          I know you said watching them die with no was devastating. I'm sure it was.

                          I remember after my injury in September of 99 I went to a big convention at Rutgers a couple months later where Travis Roy was the speaker. I'm sure you remember it. It was also when New Jersey passed a law, saying that part of peoples parking tickets would be going to spinal cord research, and I remember you pulling out a bunch of parking tickets out of your pocket and making a joke saying that you are now contributing to spinal cord research. I remember it like he was yesterday. I also remember a lot of buzz going on at the time in 99 that there would be some promising cure within those five years. Well, 2004, 2005, 2006, and now 2007 is passing and it seems like although there is a lot more going on the reality is for those of us with complete injuries we are going to just have to live with it. There really is "no hope," just wishful thinking. I applaud you on your research and sharing your information with those of us here on these forums. I don't know how you do it. Answering people's questions on forums, traveling, continuing the quest for a cure, but somehow you do. You're an inspiration!

                          I do believe that there will be a cure one day. We will not be 100%, but we will regain some sort of mobility, and anything is better than nothing. But with politics and lack of funding I think that that cure will only come for the next generation.

                          Now I will try and clarify what I was trying to say in my earlier post.

                          Let me try to better clarify what I was trying to get across in my post. I'm a quadriplegic, therefore dependent upon others for everything. If I were a paraplegic things would be completely different for me. If I were a paraplegic I would never want to have cancer, but being a quadriplegic for almost 8 years now I can't tell you that the dependency upon others makes you feel like a baby and I'm 24 now. I'm in pain constantly; however, the people I feel the worst for is not myself it's for my family.

                          I would rather have cancer and take whatever little chance I have of surviving than live the life I have lived as a quadriplegic.

                          I guess in other words you could say that I'd rather be dead than be a quadriplegic at the level I am.

                          I know others will say you should never say that you want to be dead. You need to seek counseling. All counseling and medication will do is alter the way you truly feel. I know how I feel after these eight years, and more importantly the guilt I feel of robbing my family of those eight years is worse to me than the injury.

                          I feel that although my death would be a tragedy to my family, and it would take them time to recover, at least then they would be able to eventually pick up the pieces and slowly move on and not be left with the burden that I feel I have caused them.

                          Just wanted to clarify my statement.
                          Dann21,

                          I can talk about what research happened and what needs to happen. But, I think that I have posted numerous accounts of research and why I believe there will be a cure. So, let me instead address what I think your main question is, why you should choose to live.

                          I daresay that almost every person with spinal cord injury has considered dying. For some, the thought of living for the rest of one's life like that is intolerable. For many, the day-to-day frustrations are overwhelming and the knowledge that it is hard for your caregiver makes it doubly intolerable.

                          Almost everybody that I know who has made the choice to live have identified three reasons to live. The first is having somebody you love and who loves you. The second is having the inner conviction that you can win. The third is wanting to give back a little of what you received.

                          I was not kidding earlier when I said that the cure is not only for you but for the people that you love, for all the people who love somebody with spinal cord injury.

                          Wise.

                          Comment


                            #43
                            I have to say thanks to Dr. Wise for the 3 reasons, and the averages of recovery, I think that is what we need sometimes when we are down with the GD drepressing side of this condition

                            bdw: Im t12 incomplete, (I think).

                            Comment


                              #44
                              Dann21,

                              Your comments are poignant and hit at the heart and soul of many with SCI. You are perceptive and wise beyond your years. I have the utmost respect for anyone working to reverse paralysis, but no one able bodied can relate to watching the clock on the wall ticking, seeing everyone around you living their lives, and feeling the emptiness of missing out on the many joys of life others take for granted.

                              Like you, I have watched the "time lines" for cures come and go. Like you, I feel the next generation will probably not have to endure the imprisonment of the body and soul as we now know it.

                              I truly wish you could at least recover to a paraplegic level in your lifetime.

                              Comment


                                #45
                                I think, part of the frustration, disillusion, and hopelessness is caused by the fact we keep reading about and discussing articals written about the Dr. Franken-Limas’ instead reading or hearing more about Rutledge Ellis-Behnke or Dr. Stephen Davies (two off the top of my head). We get to read something about their research one time, then they are forgotten; but over and over again we see the hometown rags write stories with headlines like “Vet goes to Istanbul for stem cell treatment”, our hearts are drooling for the treatment to be in the US, while our brains are thinking it’s probably an injection from a can half-filled with antifreeze, imported from Iran, and covered with a highjacked american label.
                                please . . .test what you already know; and give us what you have. we may not be dying, but we certainly are not living either

                                Comment

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